This Is MS Multiple Sclerosis Community: Knowledge & Support

I made a comment nearly a year ago that I still stand by.

If CCSVI is the cause of or consequence of MS is irrelevant from a treatment perspective. If there is a condition that requires treatment, treat it.

So why issue with this treatment?

IMO, it's because correcting the blood flow alleviates a lot of symptoms very quickly. It's because we, the captive customer base, are able to make some rather significant choices on our treatments and lives.

The empowerment of this community scares those that have come to depend (financially, emotionally, substantially) on the dependence of these patients. When I can choose to live drug-free, I just impacted someone's financial statements. When I can make a choice at all, I just impacted a doctor's self-imposed importance in my life.

At the end of the day, this is freaking simple.

The condition exists.
Treat it.
Treatment makes us feel better.
Deal with that.
Move the frick on.

What kind of publications? The data they collected from patients through a questionery.

You should know that the major problems are the complications after operation and the long-term effct of the operation. These veins have never been treated before and we can see lots of complications. Veins get collapsed, scarring, intimal hyperplasia, etc. Many patients experienced initial improvements, then after a few months their conditions got worse than before.

Unfortunatelly, things are not that simple. Wake up!

You should know that the major problems are the complications after operation and the long-term effct of the operation. These veins have never been treated before and we can see lots of complications. Veins get collapsed, scarring, intimal hyperplasia, etc. Many patients experienced initial improvements, then after a few months their conditions got worse than before.

Unfortunatelly, things are not that simple. Wake up!

Dr Simka's and Dr. Ludyga's safety study:
http://phleb.rsmjournals.com/cgi/conten ... t/25/6/286

Dr. Simka's optical coherence tomography study:
http://ccsvism.xoom.it/ISNVD/Abstract-S ... erence.pdf

Dr. Simka's ultrasonography study:
www.fondazionehilarescere.org/pdf/04-2481-ANGY.pdf

Dr. Simka's MR study:
www.ncbi.nlm.nih.gov/pubmed/20127806

Dr. Simka on BBB compromise/endothelial damage leading to autoimmmune condition:
www.ncbi.nlm.nih.gov/pubmed/19442163

If you are right about the potential for Eastern European countries to do more with the follow-up and research, it would be a very good thing! I know Erika posted about going in as a control in January of this year.

We haven't met. I go by BooBear. I researched the treatment for a long time before I was successfully treated in Albany on Aug. 13. 2010.
While many patients experience issues post-treatment, how is that different from any of the other treatments available to this community currently? By the way, these veins do stenose in patients that are on dialysis. Wanna take a guess how they treat that condition? Yup. Angioplasty.

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Hi BooBear. It is really good to hear that you are doing fine after the angioplasty. There is a thread where they tried to collect those people who have positive results one year after the procedure. You are getting close to it. As far as I remember, no one has reported yet.

You were also lucky if you think you could do a good research in August, 2010. I feel the more I learn about CCSVI the less I know about it.

As far as I remember that was the time when everyone applauded dr Sinan's techniques. As I can see time has changed since. Dr Sclafani turned back from using extra large balloons and he is also more cautious about breaking the annulus. Dr Sinan is still doing these. We saw lots of veins collapsed and full occlusions.



I agree. We all know about the potential good results, but these concerns are real and just because we have a big problem we should not add insult to injury. I really hope that dr Sclafani's approach with ivus will handle some of these problems.

We ought to be demanding some control from professionals not just for CCSVI operation, but all those alleged cures that you can buy on the internet or somewhere else, like Tysabri, yes, and don't forget, people lose more than their lives because there is a lot of market manipulation that goes on. Was who was it lost lot of money when the announcements were suddenly made about the Tysabri deaths? More to the point, who suddenly made a whole lot of money when the announcements were made about the Tysabri deaths? Who was prepared for those announcements?

The former general counsel of Biogen Idec Inc. settled securities-fraud and insider-trading charges, agreeing to pay more than $3 million related to his sale of company shares on the day the biotech company learned that a patient taking its new multiple sclerosis drug was sick with a deadly infection.

Why do I have my suspicions that a lot of MS Society Executives and a lot of neurological scientists were in a position to get to their stock brokers before that lawyer did? I must be just a natural-born paranoid.

We ought to be demanding some control from professionals not just for CCSVI operation, but all those alleged cures that you can buy on the internet or somewhere else, like Tysabri, yes,